How does chronic pain affect your life style... - Vasculitis UK
How does chronic pain affect your life style? ( multi choice answers ) ( please leave any appropriate comments
Suzym2uModeratorVasculitis UK121 VotersPlease select all that apply:
It prevents me from cooking pretty much, making a drinnk, cleaning, shopping, washing properly, sexual relationship, enjoyment of hobbies, playing with your pet or child.
basically it interfers with Every aspect of your life
I have been trying to improve my mobility as DWP have stopped my mobility allowance, I'm now getting a lot more pain in my legs to the point where I have pain most of the time but especially at night. This does disrupt my sleep quite badly which then makes me feel quite Ill the next day.
When the pain is bad life just stops.....
Ever since I was diagnosed, three years ago, I've always had pain in my ankles. It seems now that since May this year I've also developed "Migratory Acute Teno-synovitis" which we are still trying to locate the reason why.
The pain is so intense. I have vasculites Churg Struss Syndrome.
It interfers with everything
I have had an " interesting " pain journey. I was referred to a specialist pain clinic, ran by an anaesthetist, by my Rheumatologist. At that point my jaw/ facial pain was at its worst.
At the first appt I was asked if I would be prepared to consider all options. I said yes ( wanting to be co operative ) and was referred to a Psychiatric trainee. I only learned afterwards that they labelled my symptoms/ illness psychosomatic and the anaesthetist said my pain symptoms were caused by depression and poor sleep!
All this culminated in my illness being labelled " significantly psychological " by my then Rheumatologist. I did see the pain team physio, who was lovely, who recommended pacing myself etc. In the end I said to the pain clinc that I felt I had an as yet undiagnosed inflamatory disorder which was causing my pain, not a diagnosis of chronic pain.
To this day pain remains an issue. It stops me sleeping and has interfered with my work. The only thing that helped was prednisolone and immunosupressants, now I use a hot water bottle and try and distract myself.
I feel very let down by my experience. I didn't go to the pain clinic looking for a diagnosis but I do feel I was treated very badly.
My main 'troubles' are with exercise, which I do try to do a fair bit, along with the usual 'tummy troubles', mostly constipation. I do also have headaches, on occasions, mind you don't we all? Interesting results though.
AndrewT
Really the pain in my foot stops me for taking the long walks I've done in the past. I've had tendonitis on the top of the right foot for two years. Yet when I had an MRI, nothing showed up except a bit of arthritis near the heel.
It's irritating because the left foot is pain-free. I've done the usual - calf stretching, yoga foot roller, inserts, etc.
I'm beginning to lose my faith in specialists at this point.
My pain is exacerbated by breathing difficulties and causes mobility problems. Walking is difficult on two levels, pain in lower back and hips, and breathlessness. I find it difficult to sleep because finding a position that doesn't cause pain is virtually impossible. I can't exercise, therefore can't lose weight. I have RA, Sjogren's Syndrome, Vasculitis, Bronchiectasis, Osteopenia and Hypertension. I've also had cancer for which I'm still having treatment although in remission.
I have been in constant pain since being diagnosed with Rheumatoid Vasculitis last April. I am able to work and, to be honest, this keeps me focussed!!! I am not very good at home as I am shattered after work, but my wife has been fantastic and is so supportive. My feet are a real problem and hurt constantly and I wish this pain would go away, but it won't!!
I try to be positive but find it very hard at times!!
Pains in my legs and feet along with joint pain, also have neuropathic pain in face and jaw, general fatigue stops me doing things. gets worse at night. Don't sleep more than a couple of hours at a time.
Most of my pain or discomfort has been brought on by drugs used to treat my so called unspecified Vasculitis. I have Tinnitus which began when I started taking aspirin81. My eyesight is blurry due to cataracts which are growing because of the steroids. I have neuropathy mostly in one foot caused by, I think, Lipitor to treat plaque in my arteries. And I have endless infections caused by the Methotrexate. Etc.
I have HSP - now for the second time, first having it about 10 years ago. Currently unable to stand up still for more than a few minutes overwise my legs start to ache, swell up and go red.
However I have been told by dermatoligist that vasculitis doesn't cause soreness or pain
Chronic pain slows my life down, rarely to a halt but that can happen. Planning is important BUT I have to be aware that pain will alter plans, so in the main I take every day as it comes. I think my children have missed out because I can't run around and jump about or bend like other people but try to make up for it in other ways. I still work but part time I wouldn't cope with more & that means a financial burden on the household. It affects social, emotional wellbeing and can be isolating. It can be difficult to be positive.
Lack of exercise➡ weight gain ➡ depression & vice versa, vicious circle.
I try to get on with my life & don't sit down & regret or think about it but the reality is every small part of my life & my close family is affected.
I have been in a Lot of pain these last few months ! Not much relief from pain medications ! I has definitely affected my life . I find it painful to sit , as pain is everywhere ! Definitely getting worse
Forgot to say, I have Takayasus , had it for over 50 years . Also have other conditions
